Criminal Health Care: My Experience in Insurance Company Hell

Health care has become the top domestic issue for most Americans this electoral season — and for good reason. By nearly any measure, the system simply does not work. Heart-wrenching stories of its shortcomings can be read ad infinitum. And while they rightly evoke feelings of empathy and anger, experiencing the system’s brokenness first-hand — as I recently did — gave me a new understanding of its horror.

I have cystic fibrosis (CF), a serious genetic disease that primarily affects the digestive and respiratory systems. My lungs create excess mucus that is thicker than it should be. This means I am more susceptible to everyday lung infections — such as the flu or pneumonia — which can, in turn, be life-threatening.

Despite amazing advances in medical research over the last couple decades, the average person with the disease still does not live to see his or her 40th birthday. The best we can do is stick to long, arduous treatment regimens — and trust, often in vain, that the U.S. medical system will help us do that.

Cystic fibrosis is a rare ailment; there are only about 30,000 cases in the United States. In business terms, this means that medicines used to treat CF are developed for a very limited market. And since insurance and pharmaceutical companies need to make their billions, the costs of the various drugs that I must take on a daily basis are insanely expensive. (Last spring, I calculated that my prescriptions cost more than $60,000 annually.)

That makes me a life-long cash cow for the drug companies and, paradoxically, an enormous liability for any insurance company — one that ideally should be expunged as quickly as possible. Indeed, I’m the worst kind of member to have on the rolls: someone with a chronic illness whose medical expenses, as long as a cure remains elusive, will always be exorbitant. I show no profit potential.

Not surprisingly, then, navigating the health care system has never been easy for me. Even when the system is working as smoothly as it can, I have had to jump through countless hoops. Those are an unavoidable and exhausting part of this tortuous circus. But my experience in insurance company hell reached a new low last year. Last November, I spent weeks politely jostling my inept doctor’s office and insurance provider to get one of my prescriptions filled. Nobody seemed to take me seriously or put any priority on my case, even as I stressed that I was quickly running out of my medicine. To my disbelief, I began to realize that I did not have intrinsic value in their eyes, but had effectively been reduced to a “member number” and data on their seemingly endless medical forms. And when your needs become too expensive — since the price of life apparently can now be calculated — the companies find every possible way to dodge their obligation, playing the role of absentee landlord or deadbeat dad to perfection.

The system’s labyrinthine bureaucracy serves to diffuse responsibility for those who must do the dirty work and to demoralize those forced to navigate it. People who are caring and decent in their personal lives dispassionately read the scripted reasons why they are denying medicines — which, for you, may literally mean the difference between life and death — over the phone.

“That drug is not on our list,” she says.

“We need more clinical proof that you need this medicine.”

“The review can take up to 72 hours.”

“I’m sorry, but that is our policy.”

Armed with excuses, the barricades are erected. The refrain sung. Never mind that you have a valid prescription from a doctor on their plan. Never mind that he called to authorize it and filled out the requisite “medical necessity form.” Never mind that you’ve been on that particular medicine your entire life. That is our policy.

At one point I was on the phone from the moment I woke up until the company’s office closed for four days straight. I paid close attention to their complicated explanations for the hold up and tried my hardest to follow their instructions. Once one obstacle was cleared, new ones faithfully arose. Even making the financial argument that if I didn’t get the treatment I would have to go to the hospital, which would be vastly more expensive for the insurance company, seemed to have no effect.

“I guess you should go to the emergency room then,” I was callously advised more than once. Did they realize that they were talking to a real person about his health and not some trivial matter? Did they get what an utter waste of taxpayer dollars that would be?

Completely desperate, I spoke with a friend who is a lawyer. He was eager to take action. “I’m always ready for a good fight,” he reassured. “We can send them a nastygram,” he explained, which would put pressure on the company to resolve this before it gets ugly. His confidence and support put me at ease.

The following afternoon, an insurance representative called to say that the medical director had finally approved my treatment. There was no explanation. The extensive documentation that they had been demanding was, in the end, unnecessary, as I suspected. I rushed to the pharmacy. But by the time I was able to fill the prescription, I had already gone three days without it.

My fragile health was put at risk because some faceless suit wanted to save a buck and was testing to see how much of a fight I would put up. (I was told more than once by people who had their own horror stories with health insurance that companies hope you’ll just give up. Whether it’s true or not, that is definitely how it feels.) It was an emotionally exhausting process that I hoped I would never have to endure again.

Unfortunately the fight wasn’t over. A couple weeks later, the insurance company rejected another medicine. It was déjà vu, except this time I was weary. I did not know if I had the stamina for another protracted fight. But when it comes to your health, you have little choice. I was forced to pick up the phone and make the exasperating calls all over again. After nearly two weeks of pleading — with little to show for it — I was at my wit’s end.

In talking with a friend who is an expert on New York’s different public health insurance programs, he said that he believed the company was technically in violation of the law. This was the final straw. With the confidence of someone who has nothing left to lose, I called the company and demanded an answer by the end of the day.

“I have spoken with a lawyer,” I told them, “and I am ready to take action.” Those magic words worked wonders. They snapped to attention and immediately began to work on my case. I even started receiving periodic updates by phone about their progress. It was as if I were talking to an entirely different company, one that actually cared about its customers. The about-face was striking. By the end of the day, I received a call from the representative I had been dealing with. “Go pick up your medicine,” he said. “It has been approved.”

My crisis was resolved, but what about the people who don’t have my advantages? What about the immigrant, whose first language is not English? What about the mother who works two jobs while raising children? As a writer, I can generally make my own work hours. As an activist, I am accustomed to long battles and challenging the powers that be. I have important resources, including legal help, at my fingertips. But because the majority of people in need of government-assisted health care are poor, they rarely have such backgrounds or support networks. That leaves insurers in positions of complete power, able to ignore the cries of the poor with little fear of repercussions.

It could be different. Several years ago, while living and studying in Spain, I experienced one alternative. To get my medicines, I filled out paperwork for twenty minutes at a hospital in Valencia. Without further hassle, I was able to pick up the same name brand prescriptions that I take in the United States, at one-tenth of their cost. Even though I was not a citizen and did not pay taxes, the Spanish government graciously footed the rest of the bill. They simply have different priorities, one being taking care of whoever happens to live there.

With our great ingenuity, a better, more humane system is not out of reach. Health care should not be subject to the whims of profit-hungry corporations. It must be recognized as a universal human right. To put people through such tumultuous trials for a basic necessity is criminal. Life is difficult enough.